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Guidebook to Community Consulting provides advice for people interested in starting or growing a career in community consulting. Drawing on the authors' years of experience as community consultants, it offers a wealth of practical guidance to anyone considering or establishing a successful career serving and empowering communities. It includes guidance about the personal qualities, values, and technical skills needed; how to start a consulting practice; how to collaborate with colleagues, and most importantly, how to collaborate with communities. Practical advice and tips are motivated by core guiding principles and goals including an understanding of consulting as a partnership between consultants and communities; decoloniality; anti-racism, and equity. The text is animated with illustrative anecdotes and lessons gained from real-world experience.
This chapter focuses on how community engagement (CE) can be implemented at the national and sub-national levels. CE has been identified as an essential pillar of strong people-centred governance which is needed to underpin Universal Health Coverage (UHC) reforms. The “whole of society approach” acknowledges the importance of families and communities in support of the efforts for disease prevention and control. It provides an overview of the evidence and outlines processes that enable effective community engagement and highlights lessons drawn. In particular, Thailand’s Universal Coverage Scheme’s (UCS) participatory governance approach has been a practical example and one of the myriad ways in which the voice of Thailand’s people has been embedded in legislations and operations to ensure that the governance of UCS is responsive to their needs. Four lessons from this experience include leadership and commitment at all levels, transparency and accountability to enable sustained engagement, legal frameworks, and the need for strong capacities in both the government and among communities. Lastly, it proposes the lessons learned and key messages for a proactive approach to CE in health.
Communities are integral parts of health systems and their engagement in defining health needs, priorities, solutions and in the delivery of services is essential to improving health and well-being. All communities, regardless of how they are defined, include individuals or sub-groups who, for a host of reasons are disadvantaged and experience a disproportionate burden of ill health. Identifying and engaging them is both essential and challenging, and should be prioritized. Communities interface with the health system with varying degrees of engagement ranging from passively receiving information at one end of the spectrum to actively engaging in decision making through mutually accountable relationships at the other. This chapter explores the concepts of community and community engagement and consider their role in health systems. It examines the concept of health, the changing health needs of communities and the influence of community in defining health issues and informing solutions, including the delivery of services. Finally, the chapter discusses the modalities of community engagement for health systems, particularly within low- and middle-income countries (L&MICs).
Each year, hundreds of international researchers enter Greenland to conduct scientific fieldwork. Historically, they have had little interaction with local communities and scientists at Greenland research institutes. Recognising that collaboration between Greenland and the United States can yield better research, consider more diverse perspectives, articulate the benefits of research to Greenland society, and train the next generation in a collaborative framework, representatives from both countries have been engaged in a series of events to cultivate bilateral relationships. Here, we describe the process of these events (workshops, conference sessions, and public dialogues), the findings, and the outcomes that have followed. Prior to this focused engagement, United States and Greenland scientists typically pursued their research independently. Since the engagement, more researchers from both countries have successfully partnered to obtain funding for collaborative research. Furthermore, development of a bilateral collaboration network is underway. The focused approach on bilateral engagement also proved essential for maintaining research and other activities during the global pandemic. When United States researchers were prevented from entering Greenland, their Greenland partners were able to continue the fieldwork, ensuring that progress was not lost. Future international projects can build on these successes to expand collaborative and interdisciplinary research in Greenland.
The May 2019 IPBES emphasised the scale of the current biodiversity crisis and the need for transformative change, but highlighted that the tools exist to enable this change. Conservation translocation is an increasingly used tool that involves people deliberately moving and releasing organisms where the primary goal is conservation – it includes species reintroductions, reinforcements, assisted colonisations and ecological replacements. It can be complex, expensive, time consuming, and sometimes controversial, but when best practice guidelines are followed it can be a very effective conservation method and a way of exciting and engaging people in environmental issues. Conservation translocations have an important role to play not only in improving the conservation status of individual species but also in ecological restoration and rewilding by moving keystone and other influential species. As the climate continues to change, species with poor dispersal abilities or opportunities will be at particular risk. Assisted colonisation, which involves moving species outside their indigenous range, is likely to become an increasingly used method. It is also a tool that may become increasingly used to avoid threats from the transmission of pathogens. Other more radical forms of conservation translocation, such as ecological replacements, multi-species conservation translocations, and the use of de-extinction and genetic interventions, are also likely to be given stronger consideration within the wider framework of ecological restoration. There have been significant advances in the science of reintroduction biology over the last three decades. However new ways of transferring and sharing such information are needed to enable a wider spectrum of practitioners to have easier access to knowledge and guidance. In the past the biological considerations of conservation translocations have often heavily outweighed the people considerations. However it is increasingly important that socio-economic factors are also built into projects and relevant experts involved to reduce conflict and improve the chances of success. Some level of biological and socio-economic risk will be present for most conservation translocations, but these can often be managed through the use of sensitivity, professionalism, and the application of tried and tested best practice. The role of species reintroduction and other forms of conservation translocations will be an increasingly important tool if we are to restore, and make more resilient, our damaged ecosystems.
We are using communication and engagement with stakeholders to attempt to foster positive view of eagles. We are exploring the opportunities for nature-based tourism to highlight the benefits of eagles. We are taking a partnership approach with equal input from land management sectors and conservationists.
Conservation translocation - the movement of species for conservation benefit - includes reintroducing species into the wild, reinforcing dwindling populations, helping species shift ranges in the face of environmental change, and moving species to enhance ecosystem function. Conservation translocation can lead to clear conservation benefits and can excite and engage a broad spectrum of people. However, these projects are often complex and involve careful consideration and planning of biological and socio-economic issues. This volume draws on the latest research and experience of specialists from around the world to help provide guidance on best practice and to promote thinking over how conservation translocations can continue to be developed. The key concepts cover project planning, biological and social factors influencing the efficacy of translocations, and how to deal with complex decision-making. This book aims to inspire, inform and help practitioners maximise their chances of success, and minimise the risks of failure.
Clinical trial participation among historically underrepresented populations remains low in large part due to mistrust of academic institutions and research investigators. Mistrust may be ever greater today given misinformation related to COVID-19. The Research Ambassador Program is an interactive educational workshop delivered by Promotoras de Salud/Community Health Workers and designed to both address common myths, fears, and concerns about research and encourage research participation among underrepresented populations. An evaluation conducted with 819 Latino and Black participants demonstrated a change in behavior and intention to participate in a clinical trial, with half of participants enrolling in a clinical trial research registry.
The National Center for Advancing Translational Science (NCATS) seeks to improve upon the translational process to advance research and treatment across all diseases and conditions and bring these interventions to all who need them. Addressing the racial/ethnic health disparities and health inequities that persist in screening, diagnosis, treatment, and health outcomes (e.g., morbidity, mortality) is central to NCATS’ mission to deliver more interventions to all people more quickly. Working toward this goal will require enhancing diversity, equity, inclusion, and accessibility (DEIA) in the translational workforce and in research conducted across the translational continuum, to support health equity. This paper discusses how aspects of DEIA are integral to the mission of translational science (TS). It describes recent NIH and NCATS efforts to advance DEIA in the TS workforce and in the research we support. Additionally, NCATS is developing approaches to apply a lens of DEIA in its activities and research – with relevance to the activities of the TS community – and will elucidate these approaches through related examples of NCATS-led, partnered, and supported activities, working toward the Center’s goal of bringing more treatments to all people more quickly.
Structural racism in the USA has roots that extend deep into healthcare and medical research, and it remains a key driver of illness and early death for Black, Indigenous, People of Color (BIPOC). Furthermore, the persistence of racism within academic medicine compels an interrogation of education and research within this context. In the spirit of this interrogation, this article highlights a unique model of community-engaged education that integrates cultural humility. As an individual and institutional stance, cultural humility denotes lifelong learning and self-critique, the mitigation of power imbalances, and accountability. The integration of cultural humility emphasizes that when space is created for BIPOC communities to lead the way, education regarding healthcare and research can be effectively reimagined. Demonstrating this effectiveness, six community partners led the development and implementation of a five-module Structural Racism in Healthcare and Research course. Using a cohort model approach, the pilot course enrolled 12 community members and 12 researchers. The curriculum covered topics such as history of racism in healthcare and research, and introduced participants to a cultural resilience framework. Evaluation results demonstrated a significant increase in participants’ knowledge and ability to identify and take action to address inequities related to racism in healthcare and research.
Climate change threatens archaeological sites and cultural landscapes globally. While to date, awareness and action around cultural heritage and climate change adaptation planning has focused on Europe and North America, in this article, the authors address adaptation policy and measures for heritage sites in low- and middle-income countries. Using a review of national adaptation plans, expert survey and five case studies, results show the varied climate change adaptation responses across four continents, their strengths and weaknesses, and the barriers to be addressed to ensure better integration of cultural heritage in climate change adaptation planning.
The COVID-19 pandemic accelerated a trend for clinical and translational community-engaged research in adapting to an increasingly virtual landscape. This requires a framework for engagement distinct from in-person research and program activities. We reflect on four case studies of community engagement activities that inform a conceptual framework to better integrate the virtual format into community-engaged research reflecting key tenets of health equity and antiracist praxis.
Methods:
Four projects were selected by community-engaged research stakeholders for an in-depth review based on how much the virtual transition impacted activities such as planning, recruitment, and data collection for each project. Transitions to virtual engagement were assessed across ten areas in which community engagement has been demonstrated to make a positive impact.
Results:
Our analysis suggests a conceptual evaluation framework in which the ten community engagement areas cluster into four interrelated domains: (1) development, design, and delivery; (2) partnership and trust building; (3) implementation and change; and (4) ethics and equity.
Conclusions:
The domains in this conceptual framework describe critical elements of community engaged research and programs consistent with recommendations for health equity informed meaningful community engagement from the National Academy of Medicine. The conceptual framework and case studies can be used for evaluation and to develop guidelines for clinical and translational researchers utilizing the virtual format in community-engaged research.
In addition to facing numerous healthcare disparities, rural America is chronically underrepresented in clinical research. This gap was made more evident during the COVID-19 pandemic. St Lawrence Health, located in rural Upstate New York, established its Clinical and Rural Health Research Department in 2015 to help close this gap. The research department then launched the DISRUPTS (Developing InfraStructure for Research to Utilize Patient-centered Techniques at St Lawrence Health System) program to build the infrastructure to conduct Patient-Centered Outcomes Research (PCOR). Together with a diverse committee, the team used proven methods and frameworks to develop a model for engagement, content creation, and education delivery that was successfully used to create educational programs on PCOR and COVID-19. The resulting DISRUPTS webinars had a combined total of over 450 live attendees and over 1,110 views on recordings. Furthermore, nearly one-third of those who participated in the COVID-19 vaccines webinar indicated they were more likely to receive a COVID-19 vaccine after taking part. DISRUPTS can serve as an important model for other rural communities that aim to increase access to and engagement in PCOR, and which hope to improve outreach and education efforts in their communities.
The University of Pittsburgh (Pitt) Clinical and Translational Science Institute (CTSI) and the nonprofit Bidwell Training Center co-developed a new program for translational workforce diversification and development to foster diversity and inclusion in clinical research. The STricklAnd Research Training (START) program provides students in the Medical Assistant program at Bidwell a career path in clinical research. We created a 12-hour didactic package that covers responsible conduct of human subjects research and good clinical practice as an add-on to existing vocational curriculums. Students have the option of completing a clinical research-related externship at Pitt, which includes mentoring, shadowing, and protocol-specific training on a study team whose intention is to hire them as a clinical research assistant. Those who accept a position at Pitt receive continued mentorship, education, and professional development through Pitt CTSI. In the first three cohorts, two of which had access to research externships at Pitt, 92% of students successfully completed the instruction in clinical research. We plan to expand START to new venues to train and hire local community members from diverse backgrounds who can bring their lived experience to research programs.
Communities of color have faced disproportionate morbidity and mortality from COVID-19, coupled with historical underrepresentation in US clinical trials, creating challenges for equitable participation in developing and testing a safe and effective COVID-19 vaccine.
Methods:
To increase diversity, including racial and ethnic representation, in local Los Angeles County NIH-sponsored Phase 3 SARS-CoV-2 vaccine clinical trials, we used deliberative community engagement approaches to form a Community Consultant Panel (CCP) that partnered with trial research teams. Thirteen members were recruited, including expertise from essential workers, community-based and faith-based organizations, or leaders from racial and ethnic minority communities.
Results:
Working closely with local investigators for the vaccine studies, the CCP provided critical insight on best practices for community trust building, clinical trial participation, and reliable information dissemination regarding COVID-19 vaccines. Modifying recruitment, outreach, and trial protocols led to majority–minority participants (55%–78%) in each of the three vaccine clinical trials. CCP’s input led to cultural tailoring of recruitment materials, changes in recruitment messaging, and supportive services to improve trial accessibility and acceptability (transportation, protocols for cultural competency, and support linkages to care in case of an adverse event). Barriers to clinical trial participation unable to be resolved included childcare, requests for after-hours appointment availability, and mobile locations for trial visits.
Conclusion:
Using deliberative community engagement can provide critical and timely insight into the community-centered barriers to COVID-19 vaccine trial participation, including addressing social determinants of health, trust, clinical trial literacy, structural barriers, and identifying trusted messenger and reliable sources of information.
Community Health Workers and Promotoras (CHW/Ps) are valued for their role in helping to engage community members in research. CHW/Ps have traditionally received variable training in research fundamentals, including importance and promotion of research rigor to establish consistency in the methods used over time. Research best practices training exists for research professionals, but no standard training is provided as part of the CHW/P job role. To develop this CHW/P research best practices training, our team engaged English- and Spanish-speaking CHW/Ps to watch an early version of an online module and to examine perceptions of the relevance of such a training and optimal delivery methods.
Methods:
Six virtual focus group discussions were conducted (three in English and three in Spanish) across different US geographic regions with currently employed CHW/Ps.
Results:
Forty CHW/Ps participated (95% female, mean age 44 years, 58% identifying as Hispanic/Latino). Four themes emerged: relevance of training, benefits of providing a certificate of completion, flexible training delivery modalities, and peer-led training.
Discussion:
With participation from representatives of the intended learner group of CHW/Ps, our team found that CHW/Ps valued learning about research best practices. They perceived culturally- and linguistically appropriate health research training to be highly relevant to their role, particularly for communicating key information to community members about their participation in health research. Additionally, participants provided input on effective dissemination of the training including the benefit of having proof of course completion, involvement of peer trainers, and value of providing the option to participate in online training.
In this manuscript, “Intersectional Structural Stigma, Community Priorities, and Opportunities for Transgender Health Equity,” Poteat and Simmons outline the legal and policy barriers that impede efforts to end the HIV epidemic among transgender people in the South. They present qualitative and quantitative data from a community engaged research study conducted with transgender adults and other key stakeholders as well as finding from an analysis of policies impacting transgender people in both states. Violence prevention and decriminalization are highlighted as key policy initiatives that would advance health equity for transgender people.
Despite the adversity presented by COVID-19 pandemic, it also pushed for experimenting with innovative strategies for community engagement. The Community Research Advisory Council (C-RAC) at Johns Hopkins University (JHU), is an initiative to promote community engagement in research. COVID-19 rendered it impossible for C-RAC to conduct its meetings all of which have historically been in person. We describe the experience of advancing the work of the C-RAC during COVID-19 using digital and virtual strategies. Since March 2020, C-RAC transitioned from in person to virtual meetings. The needs assessment was conducted among C-RAC members, and individualized solutions provided for a successful virtual engagement. The usual working schedule was altered to respond to COVID-19 and promote community engaged research. Attendance to C-RAC meetings before and after the transition to virtual operation increased from 69% to 76% among C-RAC members from the community. In addition, the C-RAC launched new initiatives and in eighteen months since January 2020, it conducted 50 highly rated research reviews for 20 research teams. The experience of the C-RAC demonstrates that when community needs are assessed and addressed, and technical support is provided, digital strategies can lead to greater community collaborations.
COVID-19 has widened the existing digital divide, especially for people from socially and economically deprived communities. We describe a program evaluation using a community participatory approach to develop self-reported items of patient experience with technology inclusive of digital access and literacy. The feedback received from Community Advisory Boards and Community Engagement Studio members led to the evaluation and refinement of the individual items. The community-based participatory approach highlighted in our paper to develop these items could serve as a model for other screening tool development for enhancing equity and inclusiveness in clinical care and research.